Sunday, February 5, 2012

Today's contributor is Linda, who blogs at Outrunning the Storm.I lost a close friendship after my four year old son, Charlie, was diagnosed with Asperger's Syndrome. Our children had been in the same preschool class together until mine was asked to leave due to growing behavioral problems.

When after nearly a year of struggle we finally received his diagnosis, I shared it with my friend.

Asperger's, I said. At the time, this new word was still bitter in my mouth and every time I heard myself say it out loud, it felt like a punch to my chest, it took my air for a second or two.

But why, she responded, I don't see it.

I wasn't ready yet. I had no words. I stumbled through a string of reasons I did not yet fully understand myself. He has trouble transitioning, he doesn't get social cues, he can't see other people's perspectives.....

That sounds like every four year old I know, she responded, maybe my daughter has Asperger's too.

Yeah, they are all like that, but, it's just that he's ...well....more....

It sounded weak because that's how I felt. Weak and alone and afraid and I needed so much from her in that moment. I just didn't know what yet. So I let our friendship drift apart.

She was right though, the hitting, shoving, and biting other kids, that my three year old was doing at preschool, was in many ways typical behavior for that age. Though he did it much more often than any of the other kids, that was not the entire story of why it is not the same.

Here is the difference. All children will act out in some way as they learn about the world. But, a typically developing child will see the reactions that other kids, teachers, or parents have to these behaviors and learn connections of cause and effect. This doesn't mean they will never do them again, but they are learning to trust their instincts about people and how they can be expected to behave. But, autism, for my son, means he does not see these reactions so he does not learn from this relationship of social cause and effect. To him people's angry reactions and subsequent punishments come completely out of the blue and end up giving him all the more reason to think he needs to fight to defend himself from a confusing and unpredictable world.

There are several reasons why he doesn't see these reactions. He does not recognize facial expressions. So the parental 'look' we are all so used to doing, means nothing to him, he simply doesn't see it. He can not hear the emotional tone in voices, so while a sweet, gentle voice is a preferable sound to him, it implies no different meaning than does an angry, stern tone. Finally, he does not understand that the way he views the world in any given moment is not the same as the way everyone around him sees it. So, if he thinks throwing a toy at someone is funny, then he has no reason to believe that child would see it any differently. By the way, this is called theory of mind, this understanding that everyone has their own unique thoughts and feeling, and some will say it means people with autism lack empathy. Please, please know this has nothing to do with empathy, that is a misconception that is so very hurtful to people on the spectrum and those of us who love them.

At one point, after I had read all the books and thought I understood, at least intellectually what everything I just explained meant, there was a moment with my son that finally brought me true clarity. I think it may have been the first time, in fact, I really saw him and understood what a struggle life must be for him.

We were at a park with his twin brother Tommy and Tommy's wild, raucous friend Kyle. Tommy and Kyle were running around, screaming, chasing each other, and laughing when Tommy began, through fits of giggles screaming, no. no, Kyle stop! He then happily continued to invite Kyle to try and catch him. At this moment, Charlie got up and grabbed Kyle by the shoulders, shoved him to the ground, and sat on his chest. I jumped up and quickly grabbed him off the boy.

What are you doing! I screamed.

Tommy told him to stop and he wouldn't.

I fell to my knees, I got it. That is all he saw. Not the laughter, not the obvious enjoyment in Tommy's voice. Just the words, that's all he had to go on. He was blind to the rest. Just imagine trying to navigate the social world on people's actual words alone.

I have since gotten back in touch with my lost friend. On our neighborhood walks, while the kids are in school, we once again talk about our mutual love of books and food and all the things that make me feel like a whole human being and not just a special needs mom.

But, then I make sure the topic turns to autism and all it means for our family. Because I know, my son will spend his life having to conform to fit in this world but, I have to believe that if I keep sharing his experiences with anyone who will listen then the world may learn to conform a little bit to fit him too.

Who the hell do I think I am?

Snarky, profane Mama to 2 boys: Child 1 is autistic and Child 2 OMGISN'T. I write about... stuff. Sometimes. Other times I write about other stuff. A lot of the time I don't write anything at all. Sometimes I draw really bad and stupid pictures. I'm not just saying that, I mean, they are just awful.